[SueAndHerZoo]

in reply to: DVR Alert! Graves’ Segment on The Balancing Act airing on Lifetime Television® #1183580

Thank you!

[SueAndHerZoo]

in reply to: Stomach clenches = low TSH? #1183551

Thanks, Liz….. nice to know you can relate and glad to hear yours has cleared up. Yes, my nerves have always been in my stomach (even as a kid) so I’m totally aware of the connection. But when you are sitting on the couch watching tv and perfectly relaxed and you can feel the spasms and clenches, you know that it’s coming from somewhere other than stress. My chore is to figure out if it’s the colitis flaring up or the TSH level doing it. At this point I have doubled the colitis meds but now I wonder if I should tweak my Levothyroxine a little more to get my TSH a little higher.

Normally I would say this is a no-brainer and that it’s the TSH level causing my colitis flare, but what puzzles me is that even when my TSH was LOWER than this, my intestines were behaving. Maybe this is yet another delayed reaction to the changes we go through with this lovely disease.

Thanks for replying.
Sue

[SueAndHerZoo]

in reply to: How long before TSH catches up to dose change? #1183542

Thanks, Kimberly, for the links. I’m thinking neither one of those issues are the problem but it’s worth considering and I will mention it to doc next time I see him.

Thanks, Liz, for your note – it did help a lot. I have been slowly (VERY slowly, much to my endo’s dismay) lowering my Levothyroxine since my surgery (July of 2013). I started at 125 mcg. and have been coming down in tiny increments for the last 18 months. I’m now at 88 mcg. (for the past three months) and I feel good at this dose, but the TSH just came back at .23 (normal range .40 to 4.0). I’m guessing when I talk to doc he’ll tell me to drop down some more but I am hoping if I give it a little more time maybe the TSH will go even higher on its own. If he does urge me to lower Levo some more I will do 88 mcg. 4 days a week and 75 three days a week. I agree – I would rather be a little low on TSH than a little high.

I’m not calling him because I don’t want to change doses but I’m sure when he catches up with the paperwork on his desk I’ll be getting a call from him. Thanks for the feedback.
Sue

[SueAndHerZoo]

in reply to: How long before TSH catches up to dose change? #1183539

Hi Kimberly.
No, I’ve not seen a normal TSH since my surgery. I’ve been hanging in the .01 to .04 range for over a year past surgery and FINALLY jumped up to .1 a few months ago, and then to .23 during this last blood test. My T3 and T4 were indicative of me still being hyper for the first year post-surgery but in the past 6 months those have fallen into normal range. It’s just the TSH that still shows me hyper.

So you think I SHOULD lower the levo even more, huh? I was hoping that if I stayed at this dose a few more months the TSH would creep up a little more.
Sue

[SueAndHerZoo]

in reply to: Just an update. #1183321

OK, so you’re now on the kiddie roller coaster instead of the adult one – which means you’re on the home stretch to the merry-go-round!

I have no idea what my TSH is but I can stay awake all day and evening and have energy to do all the things I want to do, yet when I go up to bed I am able to fall asleep quickly. For me, that’s pretty close to perfect. (Amazing how little we ask when we’ve been through Graves hell!)

Of course now my colitis is acting up so, as has been said, “it’s always something!” But I still count my blessings every day that these are not life-threatening challenges I deal with and appreciate that I have a job, a roof over my head, and food on the table. There are lots who don’t have that so I am in no position to bitch (much). Luckily we have this forum where we CAN come and bitch, and know that others will understand.
Sue

[SueAndHerZoo]

in reply to: Just an update. #1183319

Darn, sorry I’m so late to replying – I apparently never subscribed to this thread so never saw that there were additional messages in it!

I tried contacting Boomer a few times through PM and am getting nothing back. Scares me, a lot.

I have been at the same dosage for 3 months and 1 week and I have no idea where my levels are because I keep postponing my endo appointment and stalling on getting my blood drawn. The truth is, I feel pretty darned good where I am now and really don’t WANT my doc to see my numbers because he’ll probably encourage me to tweak a little more. I just really want to enjoy being at a consistent dose for a while and not deal with the side affects of changing the dose, ya know? My curiosity will get to me soon, though, and I will have blood drawn, but nothing says that I will change my dose even if he tells me to. If my TSH is at least close to the minimum acceptable level I may stay right here for a while.

So nice that some of us old-timers keep checking back in…. we’re kinda like family with all we’ve been through.
Sue

[SueAndHerZoo]

in reply to: Just an update. #1183312

Hi Barbra – so thrilled to hear that you’ve found some normalcy and relief from the hell known as Graves Disease! It’s kinda like childbirth, isn’t it? It’s absolutely hell when you’re going through it and you don’t think you’re going to be able to take much more, but once it’s over, you tend to forget how bad it was.

I think I’m at or close to my sweet spot. I have been at the same dose for almost 3 months and I think I like this dosage so I will have blood drawn in a week or two and see where my TSH is. It’s so nice to give our bodies some consistency and as a result our bodies stop beating on us as much.

Wow… Boomer. His disappearance is kind of scary / upsetting. I’m going to go back into my private messages and send him one to see if he replies. You’re right – he definitely gave us cause to wonder what happened to him. He was so actively here and then….. GONE.

Congrats on feeling good…… let’s hope more people can join that team.
Sue

[SueAndHerZoo]

in reply to: Old (ongoing) question: WHEN to take T4 #1183351

Thanks for the feedback, Ladies. Right now setting my alarm 10 minutes before my husband’s alarm is working so I am going to stick with that for a while, but soon I think I may start going into the office earlier (and leaving earlier) so then I’ll have to re-adjust the time again.

I’m still nervous about taking all my meds with my levo – it just seems like some of the tiniest, most-innocent looking things can affect the Levo’s absorption (calcium, fiber, etc.) so I don’t want to risk it. I don’t have a problem taking my other meds with my morning coffee… it’s the darned levo that needs to have that hour afterwards.

I guess it really does boil down to just doing the SAME thing everyday, and then the body adjusts.

Sue

[SueAndHerZoo]

in reply to: Old (ongoing) question: WHEN to take T4 #1183348

Hi Flora – nice to hear from you!

Sensitive Hot House Flowers….. I like it! Maybe we should form a club and have t-shirts printed.
Sue

[SueAndHerZoo]

in reply to: Old (ongoing) question: WHEN to take T4 #1183346

Hi Shirley – thanks for sharing your experience!

I think you are on the right track with going for “consistency” because as long as we are absorbing the same amount each day, THAT is what the end goal is. I have often wondered if I could take my Levo with my other daily meds but figured I needed to keep it several hours away from them, so haven’t risked it.

If I had the same morning routine 7 days a week then I could probably make this a lot easier on myself, but weekends and weekday are drastically different, and lots of workdays are inconsistent, too.

The 6:20 a.m. alarm worked for me this morning and my husband was all over me like a hawk when he heard it go off. : Guess he doesn’t want to deal with the “PMS on steroids” that I go through when my levels fluctuate.

Nice to hear from you two….. and Happy New Year!
Sue

[SueAndHerZoo]

in reply to: Old (ongoing) question: WHEN to take T4 #1183344

Hi Ras – nice to “e” you! Great news about the remission, but sorry it was short lived. Sometimes you wonder if they’re even worth getting excited about because you’re always looking around the corner for it to end.

I’m betting you’re right about the timing of my pill and my sleep cycle. On the nights that I have slept through my pill alarm I had stayed up too late. Had I gone to bed like a responsible adult I would have probably not had a problem.

So yes, the new plan, starting tomorrow, is to set my pill alarm for 6:20 a.m. My husband’s alarm goes off at 6:30 and he has strict instructions to immediately check my pill box to make sure I took it. I’ll then stay in bed, dozing, till 7:30.

I don’t remember why I wasn’t doing that timing all along – I think there was a period of time when I was going into the office very early or getting up at the crack of dawn for road trips and decided it was easier to just get this pill thing over with in the middle of the night. It worked until it didn’t work anymore.

Hope you’re hanging in there with your symptoms and side affects….. we are truly warriors in this battle.
Sue

[SueAndHerZoo]

in reply to: I`d value your opinions! #1183459

Glad you’re feeling better, Joy, but just be prepared for good days, bad days and in-between days as your body and hormones settle into the new levels. Our meds are not “fast acting” ones and the changes in dosage don’t usually become apparent in just a few days….. I think it takes a good 6-8 weeks for our bodies to get to and stay at the new levels after a dose change. Or maybe you’re one of the lucky ones who will find her sweet spot very quickly, and I hope you can, but just be prepared that you may still have some lousy days and that doesn’t necessarily mean you need to change the dose again. There is nothing quick in this Graves Disease process.

Sue

[SueAndHerZoo]

in reply to: I`d value your opinions! #1183457

Hard for me to reply to this because what I do and what you should do are probably entirely different things, but I’ll share my experience. I had a TT about 18 months ago and have been chronically hyper since then…. practically a non-existent TSH. So of course my endocrinologist is forever lowering my dosage of Levothyroxine but since I always experience lousy side affects whenever changing doses, I now insist on changing doses S L O W L Y. He always wants me to decrease by about 12 mcg. per dose change and I have told him I’ll only change by 6 mcg. at the most….. sometimes only by 3 mcg. to minimize side affects. We always go into this “bargaining banter” at every visit where he tells me how much to decrease and I tell him what I’m willing to decrease and we meet somewhere in the middle. But all in all, I’ve told him that it’s my body and it’s me that has to deal with the side affects so I only decrease in small increments. He yells at me for about a minute at my next visit for not listening to him and then he laughs because he knows it’s the same battle we have every time.

I suppose if your numbers are way out of range then doing a large dose change makes sense, but I personally don’t see what the harm is, in my case anyway, in making frequent but small changes.

Unfortunately since you can’t reach your doctor you’ll have to follow your gut as to what to do. Good luck, whatever you decide.
Sue

[SueAndHerZoo]

in reply to: Hello #1183203

Hi, and welcome. In a nutshell, yes – you WILL start feeling like your old self again, and probably better! You WILL have a normal life, eating and drinking the things you like, and you will resume all activities and feel better doing them! Graves Disease does not have to be a life-altering diagnosis.

As was already said, each case is very unique and individual but they can all be gotten under control, either using medication, RAI, or thyroid surgery. Read as much as you can on this forum and you will see the various journeys and their timelines.

Being a Graves Warrior means you’ll probably spend some time on a roller-coaster…… the levels fluctuate and the symptoms fluctuate and patience is very important. It doesn’t happen as fast as we’d like, but it DOES happen, and you will probably start feeling better within weeks.

Don’t get discouraged – now that you’ve been diagnosed there’s a light at the end of the tunnel and you’ll get there. Just try to be patient with the ups and downs that occur along the way and keep reading others’ experiences here on the forum. There’s comfort in knowing that others do understand what you’re going through and have probably been there themselves.
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173714

Yes, thank you for the update! I am 15 months post TT and still haven’t found the sweet spot of Levothyroxine dosage yet, but we’ll get there. I keep making the changes in tiny increments so it’s probably taking longer than it needed to, but I experience side affects every time we change doses so I like to do it slowly and minimally.

Your post was perfect – so encouraging and upbeat and true on every count. I had no idea how long my Graves was making me miserable until I had my thyroid removed. Anything I go through now is minimal compared to what I lived with for years.

Keep up the good battle, and the good attitude, and please check in once in a while and I’ll try to do the same.
Sue

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